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Hypoparathyroidism; rare, incurable and often caused by surgery

Home » Rare diseases » Hypoparathyroidism; rare, incurable and often caused by surgery

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Hypoparathyroidism; rare, incurable and often caused by surgery

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Liz Glenister

CEO, Hypopara UK

Not many people know about their parathyroid glands until something goes wrong. When the glands fail they stop producing sufficient parathyroid hormone (PTH) to control calcium metabolism, causing hypoparathyroidism (or hypopara), a rare and challenging condition.

Rarely, failure is due to genetic or autoimmune disorders
but most commonly it is due to surgical removal of (or damage to) the glands –
occasionally necessary but more often accidental. About 22 per 100,000 people
in the western world have post- surgical hypopara (PoSH) – and this is rising
with increasing rates of thyroid cancer.

Liz Glenister, CEO of Hypopara UK, has brittle post surgical
hypopara following a thyroidectomy for thyroid cancer in 1992.

“I was told it was a very straightforward operation. A couple of days post-op I was lying in a total body seizure, completely contorted and unable to move a muscle yet conscious. It took me years to get over the trauma and, like many others, have flashbacks every time I have a calcium hypo.”

In common with many rare diseases, it took her years to get
a diagnosis and to find an endocrinologist who understood the condition which
requires daily management of calcium levels – ‘basically by guesswork’. Liz had
to leave teaching and pull out of her MA due to constant hypos but in 2005 she
set up Hypopara UK to provide support and information and to campaign for better
treatment. ‘I’d been told by London teaching hospitals that I was a one- off
but I was sure there were other patients out there and I couldn’t bear to think
that they were going through the same thing.’

Hypoparathyroidism
severely impacts quality of life and is associated with renal failure and an
increased risk of death. Liz says: ‘We have come a long way but there remains
an urgent need to improve surgical outcomes and address the very real risks which
patients face.’

Hypopara UK works with top endocrine surgeons to improve
this. ‘’ PoSH is a serious condition that is generally not well understood. Our
specialist advisors recognize the need for a change in practice and attitudes
and are dedicated to furthering education and research.’’

Consultant Endocrine Surgeon, Radu Mihai from Oxford
University, found that PoSH had a severe
impact on quality of life and led to frequent returns to A&E. This
year Consultant Endocrine Surgeon, Saba Balasubramanian from the University of
Sheffield will trial an intra-operative imaging device and calls for more research on monitoring and
treatment which is currently inadequate.

Tom Kurzawinski, a Consultant Endocrine Surgeon at UCL is
currently developing a simple point-of-care, home tester for patients to test
their calcium levels. Monitoring
is a major problem for hypopara patients who are not unlike diabetics with
their fluctuating levels and need for urgent blood tests. ‘Imagine a diabetic
without replacement hormone or a home
tester to prevent hypos, says Liz, ‘there would be an outrage. But this is what
happens when you’re rare.’

‘’Living with PoSH can be very distressing so this research
gives us hope. For the newly diagnosed, it is a difficult journey towards
acceptance but patients are encouraged to know that they are being heard and
keen to get involved in studies that may improve their lives. ’’